Policy and Technology

Originally posted at Health as a Human Right

Tuesday I was at a community forum with Travis County Integral Care discussing the Texas 1115 Medicaid Waiver progress. Wednesday I attended the Texas Women’s Healthcare Coalition meeting. Last fall I participated in the Travis County Community Health Improvement Plan (CHIP). Each of these meetings were attended by several “stakeholders,” or rather individuals representing (mostly) non-profit organizations and a smattering of community members (“consumers”). At each meeting, we talked about health policy – in fact, in all of these meetings we talked about access to healthcare among other subjects. But at each of these events, something was notably missing – technology.

I worked for the state of Texas for two years and then non-profit organizations for two years. I always thought I’d work in that realm – healthcare policy. Along the way though, as I started my own practice, I entered the health tech community and a whole new world of possibilities.

I am by no means a “techy.” A year ago if you asked me about “the cloud” I would have looked up to the sky and asked if you meant a stratus or cumulus cloud? By immersing myself in the health tech community in starting Nebular Health Tech last year, I learned enough to write an article on the privacy and security of healthcare data in cloud computing. I learned about APIs and hack-a-thons. I started picking up on the idea of coding languages and figuring out what UI/UX refers to. And the best part, I learned about the myriad of solutions being developed to help improve health and healthcare – many of them right here in Austin.

But I stayed abreast of these community meetings on health policy and attended when I could. And I realized how far away these stakeholder groups were from understanding the power that technology can provide. At the same time, in talking with our startups and techies interested in healthcare, I realized they had little idea what policies are being developed.

For example, at the CHIP meetings in Travis County while my group discussed increasing access to primary and mental health care, many stakeholders talked about coordinating care and referrals. But when I brought up using a system similar to an Electronic Health Record (EHR) or other case management that could coordinate care, I got blank stares.

Or at the 1115 Waiver meeting, Integral Care talked about the programs they are working on – including one on implementation of a chronic disease prevention/management model. This project focuses on enrolling individuals with mental health illnesses in programs of “intensive case management, intervention and education supplemented by experts in exercise, nutrition, smoking cessation, and chronic disease management.” But when I talked to the program managers they had no idea what technology tools could be used to assist with the goals proposed. The documents speak of data from EHR, hospitalizations, pharmacy, disease registries, etc. to enroll consumers but nothing of mobile apps for self tracking or actual use of the EHR to coordinate care between these experts, the programs, and primary care provider.

Similarly, when I talk to the tech world and I mention the Travis County CHIP, the 1115 Waiver, or Accountable Care Organizations or other policies, I am met with blank stares from “techies.” Some startups in the healthcare industry do know a bit about policy – meaningful use and health information exchanges mostly. But mostly, they are unaware of the broader local, state, and federal policies affecting health care models and payment.

Why the disconnect?

In the policy world – mainly non-profits and government – I almost always here “I’m not a techy so I wouldn’t know anything about that.”  In other words – people stay within their boundaries. People think that just because they don’t have a degree in computer science they can’t affect technology. But the truth is, we NEED people without computer science or a “techy” background to help make the solution precisely because they don’t know the technical aspects. Without input from those who will use these technologies, the solutions will never be designed right or meet the needs of those who could use innovative solutions.

In the tech world, I hear “I stay out of politics.” Basically, those creating solutions stay within their boundaries thinking that the free market will solve all.  They forget that the policy organizations that work day to day with those most in need have valuable insight that can lead to the creation of truly unique ideas.

Having  information available at the push of a button is incredibly useful for those advocating for change. Yet few startups will enter this space and few policy makers realize these tools are available and easy to use.

We have the passion and we have the tools to make change – now we need to merge them. We can transcend the boundaries we maintain – boundaries that keep us in either the policy or the tech world –, bridge the gap between these spheres, and work together to change the world.

 

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What’s your @ Twitter Handle?

twitter-bird-white-on-blue@NebularHlthTech is the twitter handle for this group.

My personal twitter handle is @GilmerHealthLaw.

What’s your @ twitter handle?

Last week I had the great opportunity to attend The Walking Gallery 3 and Health Datapalooza IV in Washington, DC.  At both events I got the chance to meet some of my professional crushes and other industry leaders I look up to.

IMG_20130603_102550_061I met Farazad Motashari (and his bowtie) – our National Coordinator of the Office of National Coordinator for Health IT (ONC). I met Ted Eytan the Kaiser Permanente Physician Director in The Permanente Federation.  I met Fred Trotter (though he lives in Houston, we’ve never had a chance to meet), Jess Jacobs, Keith Boone, Susannah Fox, Gregg Masters, Ken Congdon, Alex Fair of Medstartr, and so many others.  I also caught up with those I interact with frequently or have met at other conferences.

At a reception hosted by athenahealth, I passed by Ken Congdon and stopped.  I had to meet him.  I read his articles all the time and we’ve connected a few times on twitter.  As I approached him, he had this look on his face like he had no idea why this girl would approach him.  Then I introduced myself, as I’ve learned to do as “Hi, I’m Erin Gilmer – GilmerHealthLaw.”  And immediately he knew who I was.  My reputation in social media had proceeded me.

twitter message

This is one of the many values of having an online presence, particularly through twitter.  Somehow, the online persona has it’s own life.  Through the power of technology, we can connect, share, and interact in new ways.  Using tools like twitter, we can grow our business, find a voice for our views and passions, learn from others.  The possibilities are endless.

I was not a fan of twitter until a year ago.  I was reticent to jump in as I thought of it like facebook (I have nothing good to say of facebook) where people shared mindless and irrelevant things.  But then I was convinced to go online to start the first health tech group in Austin and I was immediately addicted.  I realized that I could follow my favourite news feeds and thought leaders – getting information that I could never find alone.  It became a new RSS feed for me.

And then I started to retweet… and people started following ME! and the group! People started seeing me as an arbiter of information as I tweeted articles or thoughts and I told them about events I attended.  They followed me more as I started live tweeting events (using the # and sharing ideas from conference presenters) like TEDMED and Partnerships WITH Patients.  They wanted to know what I was doing and what the group had planned.

Thus my @GilmerHealthLaw grew it’s own reputation – one that served me well at this latest gathering of health tech geeks.

I encourage you all to start tweeting.  Jump in by following thought leaders, news outlets, organizations.  Retweet them if you find their tweets interesting and relevant.  And of course, you all read ONE article a day.  If you like that article – tweet it out! It’s simple and the ROI is infinite.

Maybe soon you’ll have to start introducing yourself as your twitter handle.

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73 Cents and Telling Our Stories

73cents group by Allison Peacock

From left: Joleen Chambers, Ruben Cantu, Laura Slayton, Regina Holliday, and Erin Gilmer – displaying their Walking Gallery jackets.

On April 15th, Nebular Health Tech had the great honour to host Regina Holliday for a screening of 73 Cents and an introduction to The Walking Gallery.  The idea was to bring together our patient voices and health IT endeavors to talk change.  Recently, Allison Peacock, one of our community members wrote a bit about the event on her blog which I’d like to share here: _______________________________________________________________

The importance of telling our stories: raising the Patient Voice

by Allison Peacock

I’ve decided to declare it patient advocacy month for White Horse Medicine! Continuing on the thread of my last blog on embracing our scars I want to celebrate some of the amazing patient advocate connections I’ve made in my efforts over the past few months to launch an innovative new patient-centered clinical model of care with Doctor Julie.

Not unlike Doctor Julie did, patient advocacy powerhouse Regina Holliday seems to have had our first meeting foreshadowed by the sudden appearance of peacocks. When we met for dinner one night during her trip to Austin she mentioned being really moved by some paintings of peacocks that were hanging on the wall when she dined with her Livestrong friends after a presentation at the foundation’s Austin headquarters. She felt compelled to take a photo of them and she whipped out her phone to show them to me after we met later that day. She even included this in her blog post about her trip.

I met Regina just a few weeks after the Harvard event at a meeting of Nebular Health Tech when she was in town to speak at a symposium on health technology and Nebular hosted a viewing of her documentary short, 73 Cents. Regina and many of the other attendees at this meeting shared one powerful thing in common: they had each found a way to turn a life changing patient experience into something positive. Just like Regina had with her mural painting and patient advocacy efforts, many of the developers of medical apps were inspired by the need for something unique for themselves or a loved one. Several had taken up the banner of advocacy and activism to soothe the losses and traumas of a system that had failed them in some way.

From left: Regina Holliday, Allison Peacock, and Erin Gilmer at a recent screening of the documentary short, 73 Cents in Austin.

From left: Regina Holliday, Allison Peacock, and Erin Gilmer at a recent screening of the documentary short, 73 Cents in Austin.

Although we hadn’t come together to specifically share our stories, organizer Erin Gilmer had the wisdom and generosity to end the screening with an opportunity to let everyone introduce themselves and tell us what had brought them to the meeting. One by one, each person displayed amazing vulnerability and courage.

From the mother who had challenged a doctor over his cancer misdiagnosis in her child, to medical device failures, to mental health challenges, each attendee extended the bonds of partnership-in-arms to the others in the room as they shared their personal stories. I was moved beyond measure. Although it didn’t come as a surprise to me after the fact, I was surprised at the spontaneous nature of what I was witnessing. I was gifted with something very powerful.

I’ve witnessed the power of storytelling for decades. First as a designer interpreting my clients’ needs and desires into the medium of physical spaces, and then as a professional storyteller hired to tell other people’s stories. Year after year I’ve seen what the process of unearthing and recording personal stories can do. Whether of professional missions or philanthropic legacies the effect is the same: it is the process and power of being seen and heard that changes us. (ital. added) …

______________________________________________________________

Low-Res-Allison_Peacock-2812-ROT

For the rest, head over to Allison’s site at White Horse Medicine and learn about all her endeavors in health and health CARE. Thanks to Allison for the beautiful description of the importance of our event and to contributing to the health tech community in Austin.

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Ignite! Every Day

Recently, I was given the opportunity to present at RISE Week Austin and PeopleFund’s Innovation Week about Ignite presentations and igniting every day.

I first encountered Ignite speeches at Partnerships WITH Patients last fall.  Regina Holliday asked me to give one about the community in health IT in Austin and I thought that I would just give an inspiring speech.  But it turns out and Ignite speech is a term of art.  In an ignite speech you get:

5 minutes & 20 slides (15 sec/slide)

I realized in giving this presentation that the principles of Ignite presentations should be incorporated into every speech and used every day. Continue reading

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Google Fiber in Austin – Opportunities for Healthcare

by Terry LikensGoogle Fiber

It has been a week since the news has dropped and I am sure the moving vans are readying up as people flock to Austin as they are even more eager to experience the joys of our small city, big town. Personally, I am beyond excited for Google Fiber coming to town. Continue reading

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Patient-Centered Design: Breaking Boundaries with projekt202

On April 9, 2013, Nebular Health Tech kicked off with it’s first meeting featuring projekt202.  Erin Gilmer started the meeting with an ignite speech introducing the group, why she feels a group like this is important for our community, her personal health challenges, and how together we can break boundaries and create something Nebular.  She handed off the meeting to Aliza Gold and Kijana Knight, user experience designers to talk about their experience “Rethinking the Fertility Patient Journey.”

What is user experience design (also referred to as UX)?   UX refers to all aspects of a user’s experience with a given system, including the interface, graphics, industrial design, and physical interaction.  For instance, the way your phone looks – the way the buttons are pushed and the way things move – UX’ers do that! They study behaviour and how to make technology accessible.

User-centered design is one of the most important aspects for health tech.  In fact, the FDA requires software for medical devices (which may soon include mobile medical apps) to incorporate sound principles of design.  This is where companies like projekt202 come in.

projekt202 is a design and innovation firm that focuses on user centered experience design and development. We utilize the disciplines of design research, experience strategy, interaction and visual design, digital marketing, and UI and application development to solve real-world problems. Our expertise enables us to create solutions for software, systems, and services.  Take a look at their incredible portfolio including Logitech, Deloitte, e-MDs, General Electric, H&R Block and even the NFL – showing the incredible range of their talent.

Breaking boundaries, projekt202 worked with Dr. Arredondo (known as Paco to his friends) and the Reproductive Medicine Associates of Texas to find better, faster, more efficient, and creative ways to serve their patients through finding solution in the physical and emotional space.  Stepping outside the technical aspects of UX into Service Design, Aliza, Kijana and their team collaborated with forward thinking health care providers to apply the principles of user-centered design to a doctor’s office.

In starting this “projekt” the team immersed themselves of the patient experience in a fertility clinic to understand precisely the journey these patients were facing.  They noted the emotional roller coaster that couples went through – the highs of possibility and the lows of disappointment.  The goal then was to create a smoother patient experience as they jumped into translating their user-design concepts into redesigning the clinic.

Clinic Service Ecosystem

projekt202 knew that this wasn’t just about the results of successful pregnancies the clinic would achieve.  They realized the mark of a good clinic was really in how it addressed the patient experience.  And to do this they had to look at all aspects of care including billing, how the office was laid out, education of patients, the use of technology, staff needs, and communication alongside patients and doctors.

For instance, the billing area was in a public space which made emotional conversations difficult.  The clinic space had many architectural problems that caused traffic jams and more embarrassingly  what they’d call the “walk of shame” for those facing the long corridor to the rooms where semen collection happened.

So they broke boundaries, shifting their perspectives, even teaming up with an interior designer who thought what if…

that window at the end of the office could be left unobstructed, shining down the corridor to represent “the light at the end of the tunnel.” Patients in the fertility process need hope – they need to believe in the possibility that they can conceive and this light would symbolize that in a subtle way.

Employing the same principle they utilize for their technology clients, the designers  created a patient journey map to provide a holistic view of themes they heard.  They broke down for each phase the problems and issues and directly mapped these to opportunities for improvement.  Themes included the difficulty for patients, that they need support, want to be made a priority, needed preparation for what they were about to face, and how to establish trust.  From this standpoint they found guiding principles and identified priorities in patient education, communication, technology, and the space.

slide-32-638

All of these findings can be translated to any issue in health care – whether through service design, as here, or traditional UX in technology solutions.  Above all, Aliza and Kijana impressed upon us the importance of empathy and patient care when creating solutions.

This presentation ended on a rather lively conversations with Nebular attendees from startups to patients and doctors to venture capitalists.  As all came together to break boundaries in their understanding of how working in new spaces, working with unlikely partners, and shifting  perspectives we learned new ways to truly impact the patient experience.

projekt202 and Nebular Health Tech encourage all working to disrupt health and healthcare through innovation to:

Understand the journey!

Challenge your beliefs!

Find opportunities for change!

Create a new experience!

and above all

Be different!

Slides of the presentation can be found here.

Video of the presentation forthcoming.

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Sharing Clinical Data

Originally Posted at Health as a Human Right by Erin M. Gilmer

While Big Data is a buzzword thrown about as a promise to change health and healthcare, the reality is we still have many barriers in realizing what our health data can really do.  Big Data is the concept of really large data sets.  As part of Obama’s Open Government Initiative, the government has posted an enormous amount of data sets generated by the federal government at Data.gov.  And they’ve released data specific to health at HealthData.gov clinical care provider quality information, nationwide health service provider directories, databases of the latest medical and scientific knowledge, consumer product data, community health performance information, government spending data.

But this data does not include data held by private companies or research institutions who conduct clinical trials.  This leaves data sitting in repositories that could improve public health, enhance patient safety, and spur drug development if shared more widely both within and across sectors.  But the tides are changing. Continue reading

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